Guest Post: Helen’s Story

I can’t recall the day or the month when the doctor finally gave a diagnosis, “Your daughter has Cystic Fibrosis.”

Relief flooded over me. We had a diagnosis and an explanation for the malady of symptoms that had plagued my child since she’d been born. Surely now, things would start to get better.

A treatment schedule was planned, an appointment to learn physio would come in the mail and I was sent to the pharmacy to fill my scripts.

After spending a three-hour wait to see the consultant, the appointment itself was very brief. Although the doctor told me my daughter would not have a normal life expectancy, I did not digest the ramifications of this at the time.

I was a new mum, dealing with a seriously ill child and my first pressing thought was of the need to get to pharmacy to fill these scripts before commuting home in the peak hour traffic.

Information about Cystic Fibrosis was scarcer than hen’s teeth in the early seventies, no one we knew had ever heard of this illness that I struggled to pronounce. My sister and I scoured libraries for articles and the little information we gleaned usually consisted of only a few paragraphs. The main gist of these articles was that it was a childhood illness.

Helen and Sandi 1972

Each clinic visit I tried to glean a little more information, and as three months would pass between visits I had plenty of time to frame questions. What was lacking was an open doctor, even after several visits she either lacked the courage or could not be bothered to take the time to explain to me that Cystic Fibrosis is a progressive illness. I still assumed, or had the perception, that because this treatment regime my daughter was on was working, it meant her illness could be managed.

On one visit, I was at the door about to leave when I asked, “If Sandi has children, will they have Cystic Fibrosis too?”

I can’t recall her exact answer, but the dispirited look in her eyes awoke a need in me to be given the full picture. So after waiting three months for my next appointment I asked outright what the prognosis was, and this time she finally answered.

But it wasn’t the answer I wanted. At best, if we followed the treatment regime religiously, my daughter had a 50% chance of living to thirteen.

Just after that, I had an extraordinary moment. I picked up the Daily Newspaper and read an article about a girl in Western Australia who suffered from Cystic Fibrosis. To see and read of another child with this same unpronounceable condition was mind boggling. At that time, we didn’t have a phone, so I drove to the Post Office to use the public phone and made contact with the people from the news article.

That phone call led me to a group of parents with children who suffered from Cystic Fibrosis. I learned more from them, than I had from the doctor.

Finally, I was not alone.

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Sandi’s Note:This group of parents met regularly, in the beginning, they were a support network for each other. In 1976 they founded Cystic Fibrosis Western Australia.CFWA celebrates its 40th anniversary this year – they’ve come a long way!